| Author | Message | ||
     86129squids |
Another thread from me to youn's, please pitch in your $.02 as you can. No doubt that this past year 2020 was wild and wacky for us all, and I got my share. Found out I've got what's called chronic heart failure (sounds more horrible than it is, but still sux) and just this past Thursday nite into Friday morning, found out I've got an epic severe case of sleep apnea. Some of youn's know this empirically- I snore like Papaw Squatch. So- late last year I admitted myself into the hospital with edema... I knew something was heavy not right. Find out that I've got a leaky mitral valve and a weak heart muscle. Docs figured to put me on Entresto, carvedilol, spironolactone, atorvastatin, low dose aspirin, and furosemide. I went back to work at the powdercoating gig, been doing fine. However, when I had my heart cath done, as I was coming around and off the table my cardiologist said I had severe apnea and scheduled time with the sleep/cardiology doc. So, finally got my sleep study done this past Thursday nite- the nurse that oversaw me all nite said I had one of the worst cases of apnea she had seen in 6 years of work. Yeesh. O2 levels went from 98 down to 70's/high 60's repeatedly once I was sleeping- she came in pretty quick to shove the CPAP gadget on my face. So, I spent the night feeling like a sea turtle caught in a fishing net with a Dyson vacuum molesting me. Obviously I'll need the CPAP gadget We'll see how I can get acclimated to it. Discuss. | ||
| Aesquire |
Watch for increasing muscle pain, legs in my case, with the statin drugs. Some will have that side effect while others won't, usually. Jump right on that, notify your doctor & discontinue immediately, not tough it out like I did. The muscles waste away quick, and while the statin is supposed to be important to long term plaque deposits, a few days while they switch over isn't vital. Ask & understand the function of the others, as you may need to experiment with blood pressure medication too. As to CPAP, clean like a fanatic. Good luck, it's not a death sentence any more than life is, just annoying if you keep taking meds and maybe diet. | ||
| Patches |
86129squids, My older brother passed in 2009 of sleep apnea, he was only 47 years old. He quit breathing in his sleep as before, that time he did not start back breathing. https://www.mayoclinic.org/diseases-conditions/sleep-apnea/symptoms-causes/syc-20377631   | ||
| 86129squids |
Wow, Patches. So sorry to hear that, but also appreciative for your input. It's kinda boggling to now know that this hereditary condition (both sides, mom and pop) has manifested in me so severely. As much as I love my good night's sleep, I'm kinda afraid now until I can get a CPAP set up and figured out. I've made it this long, I'll see about sleeping as much as I can on my side until CPAP. Dang. We tend to take sleep for granted, not knowing how important the quality and length should be. I've spent much of my life nearly suffocating as I sleep. That takes a toll on my entire health... including my heart. The sleep clinic lady said as much, I should have had the study done a decade or more ago. “Now I lay me down to sleep, I pray the Lord my Soul to keep; If I should die before I wake, I pray the Lord my Soul to take.” | ||
| Oldfartnbuell |
Sorry for your troubles squids. Just sleep on your side like you said until you get that crappy device to use! You can do it! you're a tuff old bird. So they say! Hang in there friend. | ||
| Jaimec |
Best advice when I got my CPAP was this: Don't go to bed until you are so tired you can barely walk. You'll be so exhausted you'll fall asleep even with that alien face hugger attached to your head. It worked like a charm. In fact, that night was the first night in a very long time that I actually had DREAMS! WOW! I woke up feeling better than I had in years, too. I got a portable CPAP with batteries for camping trips. Of course, you need a site where you can get them recharged during the day but it meant I could still enjoy the big outdoors. You know you're getting old when your favorite rally (the Finger Lakes Rally held in Watkins Glen, NY over Labor Day weekend) designates a special area for "CPAP Campers!" They had electric outlet drops where you could plug in so I didn't even need my batteries (plus, I could recharge my cell phone over night too). I guess what I'm trying to say is, a CPAP isn't the end of the world. Just the beginning of a new one. | ||
| Pwnzor |
Patches, sorry to hear about your brother. Brad, Gretchen's life changed when she got her CPAP machine. Even so, some nights she just doesn't want to wear it. I have to get on her case a bit, reminding her I'd like to wake up next to a wife who is... um... STILL ALIVE. Hang in there buddy. You know what, keeping your sinus passages squeaky clean is always a good thing, and I think may help a little... here's a freaking awesome device that you can buy on Amazon or in person at CVS. Prices are about the same for either. It has completely eliminated my sinus headaches. I do it at least twice a day when I can. I don't take it on the road with me, but it's small enough that I should get a travel case for it. | ||
| Ourdee |
I use a Rock Pals 300 watt portable power station and a 12 volt adapter for camping. This winter I picked up a Rock Pals folding solar panel so I can recharge the power station if I go for a long camping trip. The battery back up is nice for power outages. Cleaning is easier if you put the mask and hose in a bag or box with an ozone generator. Seriously, clean is important. Put the mask up where the dog can't get to it. It cost too much to find out. I change the filter after any time I use it in a hotel. Unless you like the smell of the hotel. I only use distilled water in mine. I have been using it without water for over half a year now. I use water when I feel a cold coming on. Once you get used to it you will not want to not have it. There is an alternative; a dental fixture can be made for you. It is expensive. The V.A. covers them for ex-military. | ||
| Ourdee |
To help with sleep 25 mg. benadryl (I use generic) or 3 mg. melatonin (try to stay under 5 mg.) helps. I echo the wait till you are worn out for the first night. | ||
| Patches |
My brother had the apnea sense he was young. He tried just about everything but none really help except the mask if you can get use to wearing it. Sorry to be bearer of bad news. Prayers for healing. Jeremiah 17:14 KJV 14 - Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for thou [art] my praise. Amen. - The little boy on the bike is his grandson and was about 2yo in that picture. He been riding with my brother for about a year at that time. Every time he hear pawpaws Harley running he would grab his helmet and glasses and was ready to go for a ride. No other kids was aloud to ride with pawpaw. | ||
| Ducbsa |
I've been using a CPAP for 25+ years now. Apparently I stop breathing once a minute. I use this and like it better than the type that covers the nose: https://www.cpap.com/productpage/pr-dreamwear-gel- nasal-pillow-cpap-mask-fit-pack My current machine is 24Vdc, but I saved my old 12V machine for camping. A car booster pak will last the night, but it is good to test it first. Had to make a harness to go from the cigar lighter socket to the power jack on the machine. I have to confess that I rarely wash out the hose and mask. | ||
| 86129squids |
Just got up a while ago, gots my tasty coffee... I really appreciate the penny roll of $.02 youn's have given me. Don't worry about the "being dog tired" thing, that would describe me bodily about every day, with the work that I do. Even before COVID, restaurant work whooped me about daily. Luckily I rarely if never have a hard time going to sleep. I can take my 10 minute break at work, sit and lean my head against the wall, cover my eyes with my hat, and "catnap" even with the howling noise and metal cutting going on. Eyes closed, but still aware through my hearing. I'm honestly looking forward to getting my gadget. I'm sure it'll be trial/error to find the right set-up, and then to establish a cleaning routine. (Dog warning noted- I've a dang weird Basenji who's always LOVED to lick/molest my pillow as soon as I raise my head off of it.) I've always been intrigued by William Shatner's commercials for his brand of cleaning gadget... wonder how well those work? I'd imagine there are some good online resources for CPAP users, yet to chase them down- thanks again Patches for the Mayo link. BTW your brother had a dang nice looking Road King, those apehanger bars would be just right for me. Yeah. life gets weirder as we get older. I'm fine with weird, just as long as I keep getting older. | ||
| Aesquire |
My brother in law says don't be discouraged by the first mask & likes the soclean cleaner | ||
| Chauly |
Brad, a lot of good input here. I got mine a year ago, after a sleep study showed 115 separate breath stoppages in one night. Your complications mirror mine, right down to the mitral valve tear! I started out with the nose mask for about three months, then switched to the Dreamwear nasal mask. It's a normal thing now. (The one difference between me and thee is the 4 strokes that I've had related to the aforementioned.) | ||
| 86129squids |
As much as I'd like to think a nasal rig would suffice, I'm a mouth-breather big time. Not really looking forward to having a rig like I had the other nite. Maybe it was a dream induced by the Alien larval mask attached to my face... | ||
| Oldog |
Brad try some of the internet providers, I had to pay for my machine and hardware. the internet providers may help with the cost ( 700$ vs 2000$ ) be aware that most local medical providers expect insurance also make sure that you get an Auto pap ( this one lowers the pressure when you exhale ) the So clean is expensive but its convienient and reduces the need to break down and clean the hardware. BTW With a 60-70 blood ox level the use of the machine is not optional. please take care.. Jim | ||
| Jaimec |
Squids, I too am a mouth-breather and I've been using a full face mask for almost 20 years. I've seen mock-ups of CPAP masks that look like the face-hugger, but I've never actually seen a GOOD one for sale. I'm twisted enough to buy one if I ever do, though (much to my wife's chagrin... she REALLY doesn't want to wake up, roll over and see THAT stuck to my face). | ||
| Wolfridgerider |
I snored like a mo fo. To the point my wife couldn't sleep. So I had a sleep study done and was diagnosed with sleep apnea. I tried to sleep with the cpap for a couple of months with no luck. I ended up having surgery that corrected my snoring. They fixed my deviated septum, removed my tonsils and uvula.... and for a added bonus, made some cuts in soft pallet to create some scar tissue. That was 10 to 12 years ago I think. I have started to snore again. Not bad, but enough for kick from the wife every now and then. My problem is my girth. If I stay below 230 or so I'm good to go. You were pretty thin the last time I saw you so I'm pretty sure weight is not a issue for you. If you have a hard time sleeping with the CPAP, find out if surgery would help you out. I will warn you, it wasn't the most pleasant thing I have ever done. | ||
| Jaimec |
I do have a friend who was fitted with an MAS (Mandibular Advancement Splint) and he swears by it. It needs to be fitted by an orthodontist and he had to pay around $1,000 for it (NOT covered by insurance; they would only pay for the CPAP). He considered it money well spent though. This works if you have an underbite as it will prevent your lower jaw from sliding back and collapsing your throat. That is only the cause of a percentage of obstructive apnea cases, though. Sometimes it is neurological and only a CPAP will help. The MAS could be a less invasive solution than the surgery Wolf describes, though. | ||
| 86129squids |
At age 5YO I flew through the air and split the dash of sis' Mustang with my face/nose- true story. I'll have to mention that tomorrow at the pulmonologist's office. | ||
| Ourdee |
They will do most of the adjustments for you with the machine. I adjust mine, but you know me. Thing is not an option for you! | ||
| 1313 |
Thing is not an option for you! But how about Lurch?!?! | ||
| Ourdee |
You do know that thing was played by Lurch's hand? | ||
| Patches |
Is there any information on a dive/hyperbaric chamber or oxygen tent for capa as alternative to wearing a mask? 86129squids, The bars on my brothers bike was 20in x 1.5dia. I don't remember the brand but hear is a link that might help. https://www.burlybrand.com/product/17/20-gorilla-a pes | ||
| 86129squids |
"Is there any information on a dive/hyperbaric chamber or oxygen tent for capa as alternative to wearing a mask?" Sounds like a $$$ no-go unless you are Michael Jackson. Got back a while ago from my appt., doc is gonna try to get a 'script OK'ed for a CPAP by the end of the week. Yay. | ||
| Ourdee |
The mask works by pressurizing the inside of you as compared to the outside of you to open the airway. A tent or pressure chamber can't do that. | ||
| Oldog |
Cpap Constant Positive Airway Pressure Brad your Doc should be able to get you a scrip with the pressure from the sleep study. They Titrate the patient to determine the needed pressure setting for the machine. If you were not Titrated You will need to be. AFAIK the pressure will be expressed as CM-H20 Centimeters of water column my Test many years ago was about 8-10 On some nights you may swallow a lot of air with the resulting belching and farting ( it can blow you up like a balloon ) The thing with the mask is to be patient, and keep the face piece clean I have a nose mask { fisher - Paykel } the seal is a thin inflatable silicon curtain, the Gell ones caused sores on my nose. also a humidifier is essential and a heated hose is a nice feature. IHTH | ||
| Jaimec |
Swallowing air is common when you start out, but your body will adapt. My prescription is for 14, so that's a pretty high airflow right there. "Bugling" from both ends was common the first week or so in the morning but rarely happens anymore. The only issue I have is, due to the high airflow I have to keep the mask straps relatively tight to prevent leakage around the mask. My face looks like Hell (even worse than usual) first thing in the morning with all of the red marks. Fortunately it's all cleared up by the time I'm ready for work. (Message edited by jaimec on February 02, 2021) | ||
| Aesquire |
If using a humidifier, cleaning is vital to avoid mold. The ozone types will stink up the room but will fade, my Brother in law sets the timer for 10 am. & everything is done while he's out. I don't use or apparently need one, so my knowledge is second hand. The drugs, however, for the heart, I do. Humans are varied & so are results and reactions. You HAVE to be proactive and work with your doctor to see which ones work & which ones hurt. | ||
| Ourdee |
I still snore at 14. They have me at 16 now. I am lucky that I don't get inflated by it. I use an N-31 nose mask without the pieces that go up the nose. Strap pressure is a balancing act for sure. ResMed AirSense 10 AutoSet CPAP with HumidAir |
